Acceptance

Ever since Luke came along things have certainly changed. I feel like I have gone through most of the stages of grief, the shock and denial are long gone. The pain and guilt were probably the hardest for me I guess because Luke and I have the same chromosomal duplication so I have always felt responsible. Then there was Anger and Depression. I can happily say I feel like I am at the upward turn heading into the final phase Acceptance. Acceptance is a place I long to be but I think one thing that holds me back isn't so much accepting "Luke" but accepting how life is different for everyone with him in it. I have to accept the things we can not all enjoy together as a "typical family." It is sometimes compiled by others leaving us out because of him. It is hard to explain this to many of you but some of my "special mommies and daddies" will understand where I am coming from. My friends some who I have had my whole life find it difficult to talk to me. Sometimes it is my fault I have never been the best listener I clearly prefer to talk. However, I know many of them don't want to talk to me about their everyday family issues as I struggle with mine. Many say, "I can only imagine" when I begin to tell them a crazy story about our day. But the truth is part of me can't help but think there are no words that they can say to make me feel better. Sometimes my friends feel like they are just going through the motions listening to me. The connection I had before Luke came along where I was just a "typical mommy" that couldn't get Alex to nap or eat, is long gone. I can't even describe how I feel like we are on 2 different planets. It would be like having a best friend who speaks a completely different language, the communication is so broken. The more I sit here to write this I wonder if I am really at the upward turn, where I am moving in to Acceptance, the place I long to be. My hope for people reading my blog tonight would be that although you and I may be on 2 different planets, or speaking 2 different languages I promise eventually I will be through all of my stages and get to a place of total acceptance and we can talk again in the way we used to. I just need time to finishing grieving for the child I thought I was having. My true friends will stick around and be patient in this process and wait out or weather the storm with me. The ones who are not here to experience what it will be like to be my friend once I am in the place of total acceptance will be missing out on so much!

Which came first?

I am not sure in all of you know but before I was the mother of a child with special needs I was a teacher of children with special needs. Before that I was a caregiver to adults with special needs. After that I became a friend to adults with special needs. Before that I was a caregiver to children with special needs. I was only 14 years young when I started babysitting for a family with a child with special needs. Quickly through word of mouth I became "THE special needs caregiver in my community." I tried to divide my time and worked many hours. Steve my now husband would come with me and I would change catheter bags, work G-Tube feeds, I knew all the names of the special equipment, and knew all the greatest doctors as I accompanied some families to appointments. I soon became familiar with IEP and MFE's and ABA. I trained to be an ABA therapist and made great money to help me get through my time at Kent State (where I triple majored in Multiple, Developmental and Orthopedic Disabilities K -12). I had the best job while at Kent State I did personal care for adults with disabilities so I got to hang out with amazing individuals and get paid! I developed some amazing friendships. I met the most amazing people! It was my last year at Kent when I became all too familiar with death among the special needs population. One day I was working for Michelle who is still a great friend and one of the strongest most determined people I have ever met when the reality of living with a disability took a completely different turn. It was late and I was scheduled to put Michelle to bed that night and I remember Steve was on his way to pick me up because he never wanted me to walk alone on campus at night. A friend of ours who lived down the hall from Michelle who I had come to know well myself Kimmy was injured when her attendant was lifting her into bed. She simply pumped her leg on her bed. Her attendant was very frantic and Michelle and I stepped in to help. We were having a hard time getting a hold of her family who were away from home and we were waiting forever for the ambulance to arrive. Apparently the ambulance had trouble and broke down I remember calling 911 back and arguing about how long they were taking to get there! Steve arrived to get me and Kimmy started throwing up most likely from the pain, her leg had swollen pretty bad. It was a simple bump but Kimmy was already very frail. Soon the ambulance showed up and her and her attendant were off to the hospital by that time we were making jokes trying to calm her but none of us knew it would be the last time we would see her. Kimmy ended up leaving the hospital and going back to her parents house to heal. However, she never made it back to Kent (where she was about to graduate after years of hard work) she had passed away in her sleep. Her funeral was one of the saddest things I ever experienced I will never be able to hear the song they played, "I will remember you" by Sarah McLachian and not cry. I helped organize a tree planting ceremony that year to honor her. We planted a tree outside of Prentice Hall in her honor. It affected everyone who knew her in a large way and it was that day I realized how death too soon is a huge reality when someone lives with a disability. The years went on and through my caregiving of children and adults with disabilities and now having my own child I have witnessed God take many angels from us too soon. I will forever be changed when I hear of another loss. When I complain about all of my doctors appointments and therapies I think of the children who can't go anymore and the Moms who most feel so alone. I once had a friend ask me if I ever "think of what life would be like if Luke passed away." I was of course shocked at the question but I try not to get mad when people ask me things that offend me. I think it must be hard for people to be "friends" with me. I don't want my friends to be afraid to ask me anything. When my friend asked me I was honest although I didn't want to admit I had had those feelings. But of course I have thought about how different life would be like without Luke. I try not to let my mind go there. But it is a reality every night when I put him to bed that he could seize and not wake up. Clarabelle has made me rest a little easier but what if she misses one and what if he seizes and noone is there for him. Some days with my heart beating out of my chest I fly down stairs in the morning to check on him to see if he is still breathing, especially when he sleeps later than normal. I wish things wouldn't have to be like this but they are. There was one day in particular when Luke seized the longest he had ever seized for- 40 minutes. We happened to be at Steve's Grandmothers calling hours when he started. We were pretty far from the hospital and the drugs the paramedics were giving him were not helping him he had a fever which makes his seizures much worse. That particular day I believe I feared "Death" the most- I kept thinking Gramma Kish was coming down from Heaven and taking him with her. I can't even explain how terrifying it was and how joyous it was after to see him wake up and suck his fingers like he does after it is all over. Sorry to be so depressing on the blog tonight hope I didn't make you all cry! But I will say this to all the moms out there with special needs children or not be grateful for everyday that you have with your children they are truly a gift. The truth of the matter is no one knows what God has planned for us so we must live each day to the fullest. My blog tonight was inspired after hearing of a sweet little boy fighting CF named Connor! I got to visit his moms blog and was moved to tears to see how incredibly strong she is. Which doesn't surprise me I have met some incredibly amazing moms to some amazing kids! I don't know what comes first their strength as a person or their child. People say to me all the time God must have known he was going to give you Luke so he prepared you. Then others say God knew you had a gift and strength so he gave you Luke. I know in my heart that Luke has made me stronger and together we are ready for whatever God has planned for us! Please I am asking all of you tonight to pray for sweet Connor and his family- you can follow Connors moms blog at http://www.notsobrightandshiny.blogspot.com/

Boom!

Can't believe it has been this long since I blogged! Yes the Blogging is therapeutic but I guess I must be having a good week cause I had not much to say. The last week or so Luke has been sleeping to nearly 8 am. I can't even begin to tell you what that feels like for the past 3 yrs we have not only had to fight the seizure monster but the sleep monster was attacking too. There were nights were Luke was literally awake 20 hrs straight some days just crying. I look at the episodes now and still can't tell you what they were only that he would literally scream as loud as he could like he was in pain and nothing would make him feel better. Some nights he would tug at his ears and head like he was going to rip off his ears. Just 3 weeks ago after so much frustration I drove him to the ER it was around 5 am when we got there. Of course same thing we always heard his systems were all normal, no cough, wheeze, ears were clear etc. We were discharged that particular day at about 11am only to arrive via ambulance after Luke's very first "atonic" seizure. At least that's what the neuro called it- it was pretty much an episode of complete limpness and he was turning blue. I had decided since I had never saw him lose muscle tone completely and he was having trouble breathing that I would not give him his Diastat what we use to stop his seizures. I panicked this time like I was watching him for the first time. Many of his doctors were called when we were in the ER because he had just undergo some med changes. 3 doctors came back with suggestions on what they thought we should do with his meds, one thought an increase was in order another a decrease. I left feeling very confused. The next morning I took a stand and called the neuro and convinced him to allow me to make a change I have wanted to to which was wean him off one of his seizure meds. Because Luke was having so many seizures he was hesitant but I persisted. The nurse told me, "so you want to experiment." I said, "if that's what you want to call it then yes!" Just like all the other fights I won! Big surprise and within a few weeks Luke has been sleeping almost through the night (we are down to one brief awake period at around 3:30 am). He is having some smaller seizure activity and I hate to say it is a price I will pay right now. But having him well rested and happy after a good nights rest seemed so much better than awake almost all night screaming some nights hrs on end. The seizures are not lasting long and most involve just some limb shaking instead of a full generalized seizure. Clarabelle even alerts to these episodes. She is truly an amazing gift. In the last few weeks i swear Luke has also been adding many new words to his vocabulary. he likes sing songy words with the same consonant sound like bubble, purple. The 2 words he says most often are of course his 2 favorite things "mama" and "ball!" I wish he would gain the "d" sound back. "Dada" was actually his first word that he lost when the seizures started. Steve tries to get him to say it all the time. He mimics "Gaga" instead. But his newest word has been like music to my ears- "Boom!" I don't even know why I love it so much it is just the cutest little "Boom!" I think I am most proud because it has a "b" sound in the beginning of the word and a "m" sound at the end. It is so cute - tonight as i was getting ready to go to bed I just had the hugest smile on my face just thinking about his new "boom!" When he says "Boom" you must jump and down and say "Boom!" with him. Sometimes he tries so hard to form his lips to get his "boom!" out it looks painful! When I lay him down to bed I must say "Boom!" When I zip him in I say "boom" (Yes I said zip doesn't everyone zip their kids in their beds!) I was negative I guess but I didn't have much hope Luke would be verbal ever. But lately hearing his many new words even if they are just onomatopoeia is music to my ears!

Special Treatment for the Special Boy

So this morning we took the kids to the mall to see Miss Rosa and the Dinosaur Train. I was going to go by myself with the 3 kids and Clarabelle (Luke's seizure alert dog) so Steve could work around the house. However, when Daddy found out Miss Rosa was going to be there he decided to go something about he thinks she is hot. After we arrived I realized I could have never done this alone and was very grateful daddy came no matter what his reason:) Luke couldn't sit still so him and I and Clarabelle just ended up walking around the mall visiting the booths while Daddy, Alex and Lily took in the show. Some days I wish we could all just sit like the other families and watch but Luke couldn't sit still for that long and would cry every time I stopped pushing the stroller. After the show was over a line formed to meet and greet Miss Rosa and Buddy the dinosaur. I told Alex and Lily I would wait with Luke and then they could join me cause it was a super long line. I tried twice to wait in line, Luke was crying and then I would take him out and he wanted to walk away from the line. I can barely hold him that long so I just kept lapping around the line waiting for the line to die down. After an hour or so of circling it was finally manageable so I went to get in line only to have the lady say the line was closed. I must have looked like I was going to cry and the lady looked at me and said "well let me see what I can do." I explained to her that it is very difficult to stand in line for anything that long with my son. She came back and said they will see us. A lady that must have been turned away right before me was standing there very upset and I heard her keep saying they told me the line was closed and then they let them in! She seemed less than thrilled that we got a turn and they didn't. For a moment I felt bad but just for a moment. It has taken me 3 years to get over feeling bad for "special treatment" that some people get offended by. I have family members who actually think it is unfair that we have a placard and get a "special parking spot" or "a make a wish trip." But all I have to say to them is I would trade the perks of this job to have a "normal" family situation any day. I would kill to not go out in public and have everyone ask about Clarabelle or notice Luke is different. It would give me no greater pleasure if Luke didn't ever have a very public long scary seizure in the middle of Chuck E Cheeses at a friends little girls birthday party stealing the spotlight from her special day leading the manager to invite us back on her! But for now I will take any special treatment I can get to try to give my family the normalcy that is taken away by the countless hospital stays, ER visits, and endless seizures that ruin the fun we should be having. So ask me if I care that you think it is unfair and my answer is "Hell NO! Do you want to trade situations that led us here to begin with?- I didn't think so!"

Too many children named Luke

Okay so I know I promised to write every night but the last 2 days have been depressing and I feared the blog would take a serious turn and scare all my followers away. But I guess I started it as an opportunity for me to vent to only the folks who cared to read me, since some people don't like hearing Luke's problems all the time on facebook. Many of you know that Luke was born 3 years ago, some days it feels like longer than that! Anyways I could go on to tell you all about his journey over the last 3 years but I know many of you probably know it. If not you can go to www.pawsforlukescause.com and click all about Luke to get the whole story. His biggest issue is seizures, and I guess sleep. His seizures haven't been too well controlled although in the last weeks he has been doing pretty well. In the past few years some have lasted only a few seconds to nearly 40 minutes. To say that my life as a special education teacher has prepared me for him is far from the truth. Yes it has helped me realized what he needs with his therapies (right now 14 times a month) or his special equipment. But my degree could have never prepared me for watching him go through so much in the last 3 years, no degree could. He is truly an amazing little boy who rarely loses his smile in his fight against what we have come to call the "seizure monster." I have become someone I always knew I could be but had hoped I wouldn't have to for every ones sake. I am sure most of my doctors and therapists all want me to go away and stop calling them by now. He has over 15 diagnosis's right now and about 12 regular doctors. All I want everyday is for him to be healthy and happy. My sadness comes probably out of selfishness but it affects me everyday and although he is 3 I wonder when these feelings will go away. When the weather is nice it gets worse because we visit more playgrounds and public places where I see very healthy, whole 3 year old many little boys with his same name. As I hear there moms yell "Luke" or ask them how old there precious boys are it literally breaks my heart that he struggles to climb up the playground, or trips and falls, and can't run as fast as all of his peers. It is horrible for me to compare him but it is almost like I feel a loss. Nothing compared to friends of mine who have lost their beloved children I am sure but I just wish the day would come where we could go to the playground and my mind would not wonder off thinking about what life would be like if he were like their "Luke." Another part of me realizes how special he is none of those "Luke's" could possibly be as "Strong" as he is. And I bet none of them could make everyone smile and light up like they do when they see my "Luke." Whenever I share my feelings about my gloomy days I know people think I am so negative however, the emotions that I feel are real. I guess I hope to some degree others who have been in my place feel the same way so I know I am not alone.

Makeup, Midgets, and sex changes!

Ok so I promised to tell everyone where the name came from but I am saving that for another day. Oddly enough second post of the new blog and it will not be about "seizures" or "slaying them" or anything regarding Luke. Today was a pretty uneventful day in my house just a little mishap with Lily and Alex getting into my makeup. I realized I need to teach them both how to apply mascara and lipstick because they thought the mascara was for their lips and the lipstick went all over! Literally crisis's like these are normally ever 5 minute occurrences. People will say they understand because everyone has had children but when your friends set their ring tones to circus music you realize your house is a little more 3 ring than everyone elses. So I won't go on to tell you the rest of the acts of the day cause Luke peeing all over the kitchen floor and in the dog food container, fishing in the toilet, climbing over the banister, eating his socks to the point he gagged happen all the time! But a serious conversation with Daddy doesn't happen everyday.

My husband is much different than me, I suppose in a way that is why we work. He is obviously much quieter maybe because he doesn't get the opportunity to add much to a conversation with me blabbing all the time. But tonight in the car on the way home after sharing the makeup story he looked sick. I looked at him and said, "What?" He said in a very quiet voice so Alex who was in the back seat jamming to his favorite song which appropriately is "Mean Girls" by Sugarland "Alex said to me yesterday when I grow up I want to be a girl Daddy!" Of course i just busted up laughing! He didn't find that the least bit humorous and seemed very concerned! Alex has shown a real big interest in makeup, bows, girls and anything pink, especially since Lily was born. Mommy realizes that some not all boys go through this and it doesn't mean anything but to a Daddy it seems harder to cope with. Then out of nowhere we were back to the recent debate on whether to sent Alex to Kindergarten this fall or wait a year since he will be 5 in June. I am 100% certain he is ready but daddy's reasons are all about him being the smallest in the class. I tried to explain that height is genetic he is who he is. Even if we kept him back and for a few years and he was a head taller than most children eventually he will probably be the last in line at graduation when the other children keep growing and he stops. Steve has no confident about being the short one and never has. Apparently he must have had some rough childhood moments relating to his size! So I told him he really needs to focus on teaching Alex to be confident about who he is and not worry about things he can not change like if he wants to be a woman or is too small. Steve said how do I teach him something I don't know how to do. I told him to think about all of the small people in the world who have done great things in their lives. He quipped back, "you mean like the "little people" who they use to knock down bowling pins with, or the midget strippers! All of his examples were about "little people" he saw on Jerry Springer! Even my great words of wisdom couldn't talk me out of this one! We will have to keep working on the whole size issue!

Proper Puncutation

I have been wanting to do this for a long time. The thing that has kept me from it seems like a stupid reason not to go for it- Proper Punctuation (and grammar). I write like I talk usually one big run-on sentence with multiple thoughts. Some of my friends get annoyed and have to reread my facebook statuses just to understand them. Most of my friends don't mind the many thoughts all running together and they actually enjoy them and the TMI! A few people are offended and our friendship has distanced because of my oversharing.
However, I decided to start blogging today because at the park I ran into an old highschool friend. Well actually we weren't really ever friends in highschool. I don't even think I liked her much then! She was in the popular group and I was not! But you know after highschool and with the help of all of these crazy social networking sites everyone wants to be your friend. I left my old friend by saying, "I'd chat again on facebook!" She actually said, "your statuses are so funny." I told her I was thinking of starting a blog (largely in part to not having enough characters to fit everything I need to say!) She actually said, "you should!" So dear old friend who I never hung with (in part because I didn't like you but largely because I feared I wasn't good enough for your "groupies" this blogs for you!) If she thinks I'm funny than I am all in! (It's fun being like by the popular girls!)
See already I have reread this post rechecking to make sure I used puctuation somewhere. Probably not in the right place but at least it will seperate 2 random thoughts. Another problem with me starting this I just want to keep writing and going on and on telling everyone in the world about my life. So I am going to try hard to stick to the title of the blog and I am getting tired. Just last week in response to me complaining about being so tired. My 4 year old who is very witty quipped back, "probably cause you talk so much." So in an effort to not tire myself any further I will call it a post and go to bed. More on where this blog gets its' name tommorrow.